Some days I want to put you in a bubble where nothing can hurt you and everything will turn out fine. Other days I feel strong and am ready to push you and see what your therapists will think of next. On bad days I want to hold you and cry and try to stop my mind from thinking of all the worst case scenarios that could happen. And on good days, I just love you for the amazing and wonderful joy you are to our family. A life of never knowing you would have never been complete. A life with you taken from me would be unbearable. The day to day of right now with small victories, some set backs, and endless smiles from you is a treasure in my heart. I love you so much big boy. I know we will get over these rough times and you will be a strong man with so much to offer. It is hard for mommy to watch so many kids surpass you (and Nevin) but I know that you will both make up for it. You will have mighty characters, strong and good hearts and a caring gentle spirit even if you never walk or talk. Both of you are my precious little men. There will always be a place for you in this world and you will always be needed and loved by someone.
Kisses and hugs,
Mom
p.s.
Go kick all their butts
;-)
Tuesday, October 26, 2010
Monday, September 20, 2010
Mr. Gavyn
Today was Gavyn's second neurology follow up at Cardinal Glennon. That and neuro-surgery are always nerve racking because you just don't know what they will say. You hope for the best but they could always see something you are missing, right? Thankfully, Tracy the nurse practitioner thought Mr. Gavyn was doing well. She was not terribly worried about his lack of rolling since he is seeing an OT and soon a PT. She really felt with the extra eyes on him and people working with him on a weekly basis he would be getting the hang of it soon enough. I did share that he had rolled twice on Saturday but not since then. At least not that we have seen... It was comforting to hear that she believes he will catch right back up. Give him some time since he laid in a hospital bed for 21 days and was unable to move. He lost a lot of time for a little man. She was extremely happy to see him sitting up and doing it so well! He doesn't have to go back until he is 1 unless there is a major change for the worse. Of course no one is expecting that! It seems that Mr.Gavyn is starting to get a more normal routine for Doctors... back to wellness check ups and much longer periods in between Glennon trips. Slowly, slowly the turtle wins the race.
Wednesday, September 15, 2010
3rd Baby Charm
Yesterday we went to get our haircut. Like any good Mom taking 3 boys for haircuts I packed Skyler's back pack with books, coloring books and markers. But like a busy Mom I placed the babies carseat in a spot that I could only see if I turned around and looked, not from the mirror while I got my hair cut. I was a proud Mom that I had a quiet, cooing baby, a well behaved 2-year-old and a 4-year-old who kept checking in while I was getting pampered. About 5 minutes before I was done Skyler said something about the baby and a marker. I told him not to let Gavyn have the markers because he would put them in his mouth. He responded that Gavyn wasn't holding 
marker, he had marker on him, only 1 little spotthough! I told him he better not color the baby anymore and he stayed by me until I got up. I turned around, picked up Nevin, then I saw him, Mr. Gavyn was colored head to toe! He had green on his cheeks and forehead, orange on his arms, yellow on his legs... He looked like a man ready for battle! I gave Skyler a stern warning to not color the baby again. (Although Nevin often colors himself and I feel it is a form of expression for them. But lets let Gavyn color himself when he is ready.) The girls in the shop said he was just smiling and laughing the whole time! They thought I totally knew and was OK with it. I am
OK with it, just did not know. Such a 3rd Baby, goes with the flow.
Sunday, August 22, 2010
Midnights
Dr.Werner was right...
I wrote sometime ago about the first 3 people in the PICU that made an impression on me and one of them was Dr.Werner. He was the attending the night Gavyn was admitted and also the one who showed us the images from the CT scan. Just thinking about that dark corner of the PICU where the computers are for looking at images, gives me a chill. So many conflicting and confusing emotions were going on during that time. It is still such a vivid memory that I can feel it, taste it, hear it...
Dr.Werner saying the scan was not normal...
Grabbing my throat...
Rubbing my chest...
Ryan putting his hand on my back...
Saying, "You are breaking out..."
"It happens,"Dr.Werner....
Mind swirling...
The only question I could think to ask was if it was brain damage. Hearing it was. Him saying to tell people to wait to ask if Gav could do things a year from then. Meaning we were not going to be sure. Anything and everything was possible, for good and bad. And then he said it, looked me dead in the eye and said, "This is not your fault. When you are lying awake at 2 in the morning starring at the stars, tell yourself that this was not your fault."
Lately I am back to not being able to sleep. I feel so extremely tired by the end of the day, crawl into bed, close my eyes, feel the warmth and comfort. After about 2 minutes I start to think of the day he was born, how that is when I passed the infection to him. The day he had the seizure, all the little signs I missed up until that event. Hearing Dr.Warner say those words, hearing every other doctor after him talking about brain damage. The day he went back in for his shunt. Every ER visit in between and after. What he is having delays with. And it all goes back to the day he was born. The day I infected him with something I had never heard of, Group B Strep. It makes me wonder, was he born with hydrocephalus, did the group b give it to him because of the meningitis? If he was born with it what did I do when I was pregnant that caused lack of air to him or something else? The more I contemplate the less I can sleep.
I remember Dr.Werner's words and try to make myself believe that. I remember Dr.Garret telling me that Group B is on many things and they don't know enough about it. Trying to comfort me. But don't you just sort of know where blame should fall? I always knew I would make mistakes at being a mom, what mother doesn't? But I would have never thought I would have risked my child's life and health. Maybe one day I will figure out what happened. Dr.Werner was right, I do lay awake at night and stare at the stars. I can't make myself believe that he was right in telling me I did not cause the damage to my child though. He was in my belly for safe keeping and I did something wrong. I was in charge of him and made a bad choice at some point.
I wrote sometime ago about the first 3 people in the PICU that made an impression on me and one of them was Dr.Werner. He was the attending the night Gavyn was admitted and also the one who showed us the images from the CT scan. Just thinking about that dark corner of the PICU where the computers are for looking at images, gives me a chill. So many conflicting and confusing emotions were going on during that time. It is still such a vivid memory that I can feel it, taste it, hear it...
Dr.Werner saying the scan was not normal...
Grabbing my throat...
Rubbing my chest...
Ryan putting his hand on my back...
Saying, "You are breaking out..."
"It happens,"Dr.Werner....
Mind swirling...
The only question I could think to ask was if it was brain damage. Hearing it was. Him saying to tell people to wait to ask if Gav could do things a year from then. Meaning we were not going to be sure. Anything and everything was possible, for good and bad. And then he said it, looked me dead in the eye and said, "This is not your fault. When you are lying awake at 2 in the morning starring at the stars, tell yourself that this was not your fault."
Lately I am back to not being able to sleep. I feel so extremely tired by the end of the day, crawl into bed, close my eyes, feel the warmth and comfort. After about 2 minutes I start to think of the day he was born, how that is when I passed the infection to him. The day he had the seizure, all the little signs I missed up until that event. Hearing Dr.Warner say those words, hearing every other doctor after him talking about brain damage. The day he went back in for his shunt. Every ER visit in between and after. What he is having delays with. And it all goes back to the day he was born. The day I infected him with something I had never heard of, Group B Strep. It makes me wonder, was he born with hydrocephalus, did the group b give it to him because of the meningitis? If he was born with it what did I do when I was pregnant that caused lack of air to him or something else? The more I contemplate the less I can sleep.
I remember Dr.Werner's words and try to make myself believe that. I remember Dr.Garret telling me that Group B is on many things and they don't know enough about it. Trying to comfort me. But don't you just sort of know where blame should fall? I always knew I would make mistakes at being a mom, what mother doesn't? But I would have never thought I would have risked my child's life and health. Maybe one day I will figure out what happened. Dr.Werner was right, I do lay awake at night and stare at the stars. I can't make myself believe that he was right in telling me I did not cause the damage to my child though. He was in my belly for safe keeping and I did something wrong. I was in charge of him and made a bad choice at some point.
Monday, August 9, 2010
Remembering
I have not posted in a long time because it is getting harder to write about Gavyn. He is doing so well, it is amazing to watch him every day and remember what a miracle he is. I still think of Cardinal Glennon on a daily basis though. I wonder when that will pass. Some days I think about it more than others, some days I only think about it because of the picture we have in the family room of him in his hospital bed. I still have nights that I can barely fall asleep because of the images in my head. The morning he had his seizure, the day he got brought back to the PICU, the day he got his shunt in... some memories are of course more vivid than others.
The last four days it has been on my mind a lot. Friday morning Nevin Lucas fell down 1 step outside and got a hair line fracture in his leg. Our pediatrician sent us to Glennon to have it checked out, she was sure it was broken but they don't do x-rays. Mr.Nev and I spent 9 hours in the ER. We visited with a few familiar nurses, watched some cartoons, played with trucks, got about 6-8 x-rays done and, we walked all around the ER.
I started to carry him around and our nurse told us if the doc came she would come get us. I never realized how small the ER was. When we rounded the corner and saw the doors for the ambulance entrance I just stopped in our tracks. It seriously caught me off guard. For a minute I actually thought I was going to be sick. To be standing in that place, with my son, looking my worst nightmare in the face again, unprepared was almost too much. I got my composure and gave Nevin a little squeeze. Then I told him that when Baby Gavyn was sick that was where he was brought in, we walked past the room he was in, it was occupied by a little girl this time, Nevin blew her a kiss.
We went back to his room for a little break, I washed my hands. When I sat down I put my hands up by my chin, resting my elbows on my knees. There is was... the smell of the PICU, of Glennon, it was the soap. When Gavyn came home from the hospital my clothes smelled like the PICU for a couple weeks. Even after washing them. Sitting in the ER with Nevin I realized it was the hand soap. It still does not make sense to me but it brought back a flood of memories.
On our second walk around the ER we passed a family moving from the ER up to the floor, perhaps the PICU. A Dad, pulling a cart with the babies seat and diaper bag, Mom was holding tiny Baby Girl, following the nurse. She looked lost, scared, alone, Dad looked helpless. I knew the look well, I had it on my face for weeks as well. I said a prayer for them, Nevin blew a kiss.
Of course Nevin left the ER that night with a cast on his leg, we came home to two other healthy boys and I knew life was OK. But tonight as I was starting to pack things for our vacation I opened up my bathroom travel bag. There were a few things in it, at first I was thinking it was from last years vacation. Then I realized as I stared at it that it was everything I used while Gavyn was in the hospital, far from a vacation. But my life is blessed because here we are, here he is and we are going on vacation.
Everyone's life has a purpose, you might be surprised what yours is.
The last four days it has been on my mind a lot. Friday morning Nevin Lucas fell down 1 step outside and got a hair line fracture in his leg. Our pediatrician sent us to Glennon to have it checked out, she was sure it was broken but they don't do x-rays. Mr.Nev and I spent 9 hours in the ER. We visited with a few familiar nurses, watched some cartoons, played with trucks, got about 6-8 x-rays done and, we walked all around the ER.
I started to carry him around and our nurse told us if the doc came she would come get us. I never realized how small the ER was. When we rounded the corner and saw the doors for the ambulance entrance I just stopped in our tracks. It seriously caught me off guard. For a minute I actually thought I was going to be sick. To be standing in that place, with my son, looking my worst nightmare in the face again, unprepared was almost too much. I got my composure and gave Nevin a little squeeze. Then I told him that when Baby Gavyn was sick that was where he was brought in, we walked past the room he was in, it was occupied by a little girl this time, Nevin blew her a kiss.
We went back to his room for a little break, I washed my hands. When I sat down I put my hands up by my chin, resting my elbows on my knees. There is was... the smell of the PICU, of Glennon, it was the soap. When Gavyn came home from the hospital my clothes smelled like the PICU for a couple weeks. Even after washing them. Sitting in the ER with Nevin I realized it was the hand soap. It still does not make sense to me but it brought back a flood of memories.
On our second walk around the ER we passed a family moving from the ER up to the floor, perhaps the PICU. A Dad, pulling a cart with the babies seat and diaper bag, Mom was holding tiny Baby Girl, following the nurse. She looked lost, scared, alone, Dad looked helpless. I knew the look well, I had it on my face for weeks as well. I said a prayer for them, Nevin blew a kiss.
Of course Nevin left the ER that night with a cast on his leg, we came home to two other healthy boys and I knew life was OK. But tonight as I was starting to pack things for our vacation I opened up my bathroom travel bag. There were a few things in it, at first I was thinking it was from last years vacation. Then I realized as I stared at it that it was everything I used while Gavyn was in the hospital, far from a vacation. But my life is blessed because here we are, here he is and we are going on vacation.
Everyone's life has a purpose, you might be surprised what yours is.
Thursday, July 22, 2010
This Road
All heavy laden acquainted with sorrow
May Christ in our marrow, carry us home
From alabaster come blessings of laughter
A fragrance of passion and joy from the truth
Grant the unbroken tears ever flowing
From hearts of contrition only for You
May sin never hold true that love never broke through
For God's mercy holds us and we are His own
This road that we travel, may it be the straight and narrow
God give us peace and grace from You, all the day
Shelter with fire, our voices we raise still higher
God give us peace and grace from You, all the day through
May Christ in our marrow, carry us home
From alabaster come blessings of laughter
A fragrance of passion and joy from the truth
Grant the unbroken tears ever flowing
From hearts of contrition only for You
May sin never hold true that love never broke through
For God's mercy holds us and we are His own
This road that we travel, may it be the straight and narrow
God give us peace and grace from You, all the day
Shelter with fire, our voices we raise still higher
God give us peace and grace from You, all the day through
Monday, July 19, 2010
Life & Death
When Gavyn was in the hospital we did not have a lot of visitors and most who did come were repeat visitors. Some of the family was unable to come because of him being in the ICU and the restrictions there are. I think friends were not sure if they should come or not. There was communication through Facebook and texting since I could not take calls while in his room and I did not want to leave most of the time. Even though I was surrounded by people in the PICU and had family ready to drop anything and come up, it was one of the loneliest times in my life.
Half of the time he was in the hospital I was staying with him full time. Usually my dad would come up in the morning and see us for a little while then leave mid-morning. Ryan would come up by 6pm to have dinner with me and stay until I would go to sleep around 10-11. During the middle of Gav's stay I was staying at my mom's house. I would wake up around 7, get myself and the boys ready, leave to go around 9, not see anyone sometimes until Ryan would come. If it was a bad day my dad would stay or mom but Ryan had to keep working. There are no vacation days, sick days or leave of absence when you work for yourself. I still do not know how he made it through. Two of our Pastors came by, my parents pastor, who I am close to (he married Ryan and I) came by frequently. A couple girl friends stopped by, brothers... It was lonely though. It was a time to suffer alone and grow.
There is one visit and visitor that I remember very vividly. It was unexpected in many ways. It was Ryan's cousin Chris. He was the only extended family member who was able to come. I was sitting in the rocker next to Gav's bed, I was journaling if I remember right. I heard a familiar voice behind me and when I looked over it almost took me a second to realize that it was Chris. It caught me off guard and when it registered with me I was just so glad to see him. I gave him a big hug. I could tell immediately how hard it was for him to see Gavyn. None of Ryan's family had even gotten to meet Gavyn before going into the hospital.
Chris is Ryan's cousin, he was the cousin Ryan had talked about when we were dating before I meet anyone. He was married to Mandi and when I joined the family their son Isaac was 6 months, he will be 7 in a few months. The first time I met the family was on Easter and Chris and Mandi were the 2 who really made me feel welcome. Chris is one of those guys that just wants to make everyone laugh and he loves to tease people. He made me feel like his little sister because his teasing is so much like my brothers. Mandi was easy to talk to, had a great smile and laugh and just wants you to feel comfortable. It was their ease in welcoming me that made me really feel part of the family.
We talked about Gavyn and what had happened. What all he was hooked up to. The plan of getting him better and what could be expected. Chris was emotional and it was hard for him to keep it together. It is hard enough to see the kids in the PICU, it is harder still to be attached to one of them and see it and I can not imagine how it felt for Chris to meet his 2nd cousin for the first time under these circumstances. He told me that it was killing Mandi to not be able to come see him. There was a reason though, she was just now 6 weeks pregnant! It was the worst setting to hear some of the best news for our family. They had been trying for years to have baby #2 and had been through many trials along the way. I was so excited! It could not happen at a better time it seemed. To be reminded that there was life outside the 4 walls we were prisoned in now. Even then I knew, they would be blessed with a healthy pregnancy and that Mandi would be the one to carry the baby girl the family had been anxiously awaiting for so many years. Baby Addy will arrive in November and we could not be happier.
There will be 3 new babies for Thanksgiving and Christmas this year. Three wonderful babies that are precious gifts all in their own way. A much awaited Baby Girl for Chris and Mandi. The first baby for Andrew and Patty. And mostly for me, Baby Gavyn, the one who almost did not make it.
Half of the time he was in the hospital I was staying with him full time. Usually my dad would come up in the morning and see us for a little while then leave mid-morning. Ryan would come up by 6pm to have dinner with me and stay until I would go to sleep around 10-11. During the middle of Gav's stay I was staying at my mom's house. I would wake up around 7, get myself and the boys ready, leave to go around 9, not see anyone sometimes until Ryan would come. If it was a bad day my dad would stay or mom but Ryan had to keep working. There are no vacation days, sick days or leave of absence when you work for yourself. I still do not know how he made it through. Two of our Pastors came by, my parents pastor, who I am close to (he married Ryan and I) came by frequently. A couple girl friends stopped by, brothers... It was lonely though. It was a time to suffer alone and grow.
There is one visit and visitor that I remember very vividly. It was unexpected in many ways. It was Ryan's cousin Chris. He was the only extended family member who was able to come. I was sitting in the rocker next to Gav's bed, I was journaling if I remember right. I heard a familiar voice behind me and when I looked over it almost took me a second to realize that it was Chris. It caught me off guard and when it registered with me I was just so glad to see him. I gave him a big hug. I could tell immediately how hard it was for him to see Gavyn. None of Ryan's family had even gotten to meet Gavyn before going into the hospital.
Chris is Ryan's cousin, he was the cousin Ryan had talked about when we were dating before I meet anyone. He was married to Mandi and when I joined the family their son Isaac was 6 months, he will be 7 in a few months. The first time I met the family was on Easter and Chris and Mandi were the 2 who really made me feel welcome. Chris is one of those guys that just wants to make everyone laugh and he loves to tease people. He made me feel like his little sister because his teasing is so much like my brothers. Mandi was easy to talk to, had a great smile and laugh and just wants you to feel comfortable. It was their ease in welcoming me that made me really feel part of the family.
We talked about Gavyn and what had happened. What all he was hooked up to. The plan of getting him better and what could be expected. Chris was emotional and it was hard for him to keep it together. It is hard enough to see the kids in the PICU, it is harder still to be attached to one of them and see it and I can not imagine how it felt for Chris to meet his 2nd cousin for the first time under these circumstances. He told me that it was killing Mandi to not be able to come see him. There was a reason though, she was just now 6 weeks pregnant! It was the worst setting to hear some of the best news for our family. They had been trying for years to have baby #2 and had been through many trials along the way. I was so excited! It could not happen at a better time it seemed. To be reminded that there was life outside the 4 walls we were prisoned in now. Even then I knew, they would be blessed with a healthy pregnancy and that Mandi would be the one to carry the baby girl the family had been anxiously awaiting for so many years. Baby Addy will arrive in November and we could not be happier.
There will be 3 new babies for Thanksgiving and Christmas this year. Three wonderful babies that are precious gifts all in their own way. A much awaited Baby Girl for Chris and Mandi. The first baby for Andrew and Patty. And mostly for me, Baby Gavyn, the one who almost did not make it.
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